Lifetime Survivors of HIV
Last updated: January 5, 2024
Together, we can change the course of the HIV epidemic…one woman at a time. #onewomanatatime
Female Lifetime Survivors of HIV
• Lifetime survivors: acquired HIV as babies
• HIV testing, treatment advances, blood product screening
Fewer transmissions to babies now – People who have acquired HIV early in life are aging
– US 2021: 13,000 lifetime survivors of HIV, mostly over age 13
• Lifetime survivors of HIV often not seen as a distinct group
Treatment Experience and Challenges
"[T]here are plenty of long-term survivors that can relate because we have the same chronic illness, but it's nothing compared to sharing the life experience of being born HIV-positive with others that were also born HIV-positive. Managing HIV as children and into adulthood is an experience and a bond that is difficult to describe."
~ HIVictorious, "My First USCHA Experience" (from A Girl Like Me)
• Dandelions
Some Language to Know
• Early acquired HIV
• Lifetime survivors of HIV
• Long-term HIV survivors
• Perinatal HIV transmission
• Perinatal acquisition, perinatally acquired • Vertical HIV acquisition
• Vertical HIV transmission
Terms to Avoid
These terms are considered stigmatizing but are still used:
• Mother-to-child transmission of HIV (MTCT)
– Use vertical HIV transmission instead
• Perinatal infection, perinatally infected
– Use perinatal acquisition, perinatally acquired instead
The Dandelions Movement
• Started in 2023 at Washington, DC gathering led by women of color with early acquired HIV
– Spoken-word piece “Dandelions” by Mary Bowman
• Visit Dandelions Movement website to connect with that community
– https://www.thedandelions.org/
• Watch special episode of A Girl Like Me LIVE on Lifetime Survivors of HIV
– https://www.youtube.com/watch?v=VsplK2_pgs4 www.thewellproject.org
Disclosure
"Disclosure has been one of the scariest things to navigate in my experience. You don't know how people will react–what they'll say, or if they'll freak out.“
~ Porchia Dees, "Attention Health Care
Providers: Insight into Why Young People May Be Not Consistently Engaging in HIV Medical Care (from A Girl Like Me)
Finding out HIV status
• Parents/guardians may not tell young people that they are living with HIV
– Teen may have internalized HIV stigma before knowing their own HIV status
– Teen may find out on their own
• Knowing status is important for managing one’s care
• Timing of disclosure to child may depend on:
– Caregiver’s concern for child’s mental health
– Caregiver’s own internalized stigma
– Surrounding social rejection of people living with HIV
Dating and Sex
“Growing up positive added its own layers of difficulty to the [dating] equation. I used to describe myself as poison ivy. I let the negative viewpoints of society and the stigma that I felt whenever people indirectly insulted me by joking about HIV alter the way I perceived myself.”
~ Lynnea, “My Cup of Tea” (from A Girl Like Me)
Limited Support Systems
• Caregivers:
– Primary caregiver may have died
– Caregiver may have their own health struggle
• Young people:
– May try to feel in control by stopping to take HIV medications
• HIV care institutions need to be “medical homes”:
– Medicines & tests
– Social support & emotional care
– Strategies for coping with stress
Mental Health
Young women especially vulnerable to mental health concerns
HIV and related stigma impacts mental health
Move from adolescent to adult care stressful
Survivor guilt over parents or friends with HIV who have died
Sexual Risk
Substance use experiments like other teens
Effect on health of long-term survivors is greater
Sexual risk taking
Fewer partners than other teens
But: condomless sex -> STI and transmission risks
Need to educate young people:
Effect of substance use on viral suppression
Violence
“I
think it's important to talk about sexual violence in intimate partner relationships as a barrier to being in a relationship while being positive. Being born with HIV can impact how you feel about yourself, but also what you might believe you deserve.”
~ Kim Canady, Member of The Well Project's Community Advisory Board
Text START to 88788
Domestic Shelters
Women Surviving and Thriving Over a Lifetime with HIV
“… Sometimes I even forget I have HIV! I have so many other things to do, I'm not really thinking about it – besides at night when I pop my pill – but otherwise, HIV is not my life. I refuse! I have too much else to think about and do. And I am loving the mom life!".”
~ Raven Lopez, public speaker and longtime advocate